“I sometimes feel like an inconvenience”
Annie, who lives with primary progressive MS (PPMS), shares her experiences with accessing healthcare support for her MS.
This is my response the article ‘Our NHS Stories’ in the Spring 2024 edition of MS Matters. On first reading it, I felt I was entering a parallel universe. There was talk of annual MRIs, seeing an ‘emotionally intelligent’ neurologist, and the need to be insistent and persevering – as if that would get results.
I struggled to remember the last time I had an MRI – 2010? 2011? Or last saw a neurologist. Here I’m really struggling… It’s a long time ago.
As I read on, a more familiar world began to emerge. There was talk of the lack of a joined-up approach in the NHS. And a lack of ongoing support for people managing long-term conditions. This sounds more like the world I inhabit.
Before I continue, I want to make it clear that nothing I say here is criticism of clinicians. In my experience, they’re doing the best they can with the pitifully inadequate resources available. They have to function under difficulties not of their making and outside their control.
Feeling alone
I was diagnosed with MS in 2007, though I’d had symptoms and an assortment of diagnoses for many years before that. I live alone (apart from my dog) and have no family locally. My son - my only child - died by suicide in 2016 and my husband died in 2018.
I haven’t had a face-to-face appointment with an MS nurse since November 2019 – obviously in part because of the pandemic. When I was first diagnosed, an MS nurse visited me at home 2-3 times a year and was easily available by phone if needed.
Then the home visits became office appointments, gradually reduced to one a year. COVID meant we moved to a fairly brief phone call every January – and that’s where I am in terms of support.
Age may be a factor, too. I’m 73 now. I don’t know what part of my daily struggles are just down to advancing age and what are the result of having MS. I don’t really know what might be capable of improvement and what I simply have to live with. We need to be insistent and persevering, but it’s also exhausting.
A lack of ongoing support
Compared to many people with MS, my symptoms are less severe. I appreciate that in times of scarce resources, priority has to be given to the people who are most in need. But I do have symptoms which are disabling, distressing and exhausting and which erode my life and functioning.
In dealing with professionals, I’ve sometimes (not always) felt less like a patient and more like an inconvenience.
For symptom management, I’ve had referrals to the continence service and to the neuro-physiotherapist in the past, but have run out of road with both services. For example, I couldn’t tolerate the side-effects of the medication for my bladder issues, and the only option left was Botox injections into the bladder. But for this I’d need to self-catheterise. MS has affected my hands, so I can be clumsy and struggle with fine movements. The continence nurse didn’t think I was a candidate for Botox, given my hand problems, and I agreed with her.
After my most recent assessment with the neuro-physio last year, I was offered a group session. But we agreed that I know what to do myself and follow an appropriate exercise regime at home.
I often find it difficult and draining to get to places, so the benefits have to outweigh the costs in energy. I also have to ensure I have enough energy to look after myself and my elderly Jack Russell terrier – it’s always a balancing act.
Being “self-sufficient”
Various professionals, over the years, have commented that I’m ‘very proficient at self-management’. But I’ve learned that this isn’t necessarily a good thing from my perspective!
I know full well there are people way more ill and way worse off than I am – but that doesn’t stop me feeling completely alone. I AM good at self-management, but I’m tired.
When I simply can’t manage independently, I will take myself off to Dignitas rather than rely on health and social care services. I hope that will be many years in the future. But it’s how I feel about that future now.
Finding the positives
Having said all that, I want to stress that my life is not all bad! I seek out what’s positive and joyous in my experience – there’s always something. My dog and my books mean I’m never lonely. And Zoom offers a real connection with far-flung friends and relatives and access to activities such as the U3A interest groups online.
Having a sense of the ridiculous helps, and I'm supported day-to-day by my own mindfulness practice. That helps me ground myself in the present moment rather than losing myself in fear, or fretting about things I can’t change.
I remember to bring compassion to my own struggles, rather than judgement and self-criticism. I’m doing my best. And I’m aware that ‘my best’ today may be more or less than my best on another day. And that’s fine.
I’m also supported by the kindness of others – friends and strangers alike. As the poet Naomi Shihab Nye says, ‘before you know what kindness really is, you must lose things…’.
If you’ve also struggled with feeling alone and accessing support, remember you can always call our MS Helpline on 0808 800 8000.
We’re also calling on the next UK government to make sure people have the support and healthcare they need to stay healthy and live well for longer. By building a thriving neurology workforce to address shortages in neurologists and MS nurses.
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